…when living with a chronic illness.
Advances in medicine have increased life expectancy for adults in America. But that also means that more people live with chronic disease for months or even years. Some experience significant suffering with chronic illness. The stress is often physical. But is there more than physical distress with chronic illness? The answer for many people is yes.
Behavioral scientist, Thomas Egnew, says that suffering with chronic illness can involve nonphysical dimensions too. These include social, psychological, cultural, and spiritual dimensions.
What do physical and nonphysical suffering look like in the life of someone living with a chronic condition?
Dave is 72 years old and was diagnosed with Parkinson’s Disease 3 years ago. His physical symptoms have recently grown worse. For example, he is having more trouble swallowing his food. He drools often and he has trouble speaking above a whisper. Now, Dave is not comfortable going to a restaurant anymore. He feels embarrassed when someone has to cut his food up into small pieces. His is self-conscious about drooling. Because his voice is soft, people have a hard time hearing him, especially in a loud restaurant. Dave has lost his desire to go out and take part in social events. As a result, his social circle has shrunk and he is becoming isolated. The loneliness causes Dave to suffer from low moods at times. And his wife is worried he is becoming depressed.
Life is very different for Dave than it was one year ago. He is struggling to find peace with the life he has lost.
Treating Suffering with Chronic Illness
Science and traditional medicine manage Dave’s physical symptoms. His doctor prescribes medication. In addition, he sees a speech therapist for his swallowing and voice problems. But what about the nonphysical dimensions of suffering? For instance, lost relationships affects Dave’s social health. His mental well-being is poor with depression and loneliness. Spiritual health is affected as he struggles to find meaning with his new life and peace with suffering.
For people and caregivers living with chronic illness, we need to acknowledge their physical and nonphysical suffering. As Egnew put it: “Saving and prolonging life incur an obligation to accompany patients on their illness journeys, to care for their souls as well as their bodies.”
Therefore, the optimal treatment for chronic illness may be addressing both physical and nonphysical suffering. Traditional medicine is best equipped to treat physical problems. But millions of people living with chronic illness experience distress that isn’t physical. And they don’t know where to turn to help themselves.
Positive psychology makes the case that finding happiness is the combination of relieving suffering and building well-being. Both are equally important. For example, medications may help relieve the anxiety or depression. However, will a person thrive just because there is less or no suffering? Positive psychologists argue that relieving suffering alone does not bring happiness. Instead, for someone to flourish or thrive, they must also learn the skills of well-being.
In a similar way, how can someone living with a chronic illness live as well as possible? Relieving suffering and building well-being may be an answer.
What is Well-being?
What, exactly, is well-being?
Positive psychology defines well-being as the ability to create and experience 5 things:
- positive emotions
- engagement
- relationships
- meaning
- accomplishments
Other ways to describe well-being might include:
- coping in difficult circumstances
- showing resilience
- building optimism
- engaging in positive mind management
For severely ill patients, Egnew describes well-being as “treating the soul.” This might mean helping people to accept what has happened or find meaning in suffering. Making new connections is also important.
Building Well-being
There is no one answer for what well-being means for every person. This is because each disease is different. And each person has their own view of what “living well” means. This can be influenced by their preferences, values, and circumstances.
For one person, improving physical health may be important to their well-being. For example, a person with diabetes may be struggling to control her blood sugar levels. She knows that exercise can help lower blood sugars but she has never enjoyed exercise. However, the more she learns about diabetes, the more she understands that increasing her physical activity can control her blood sugars and decrease her chance of more health problems in the future. In this scenario, someone who once dreaded exercise may now see it as a path to decrease her own physical suffering.
For Dave, it’s a different story. Traditional medicine manages his disease with medications and therapy. But a cure is not currently possible. So for him, addressing the nonphysical dimensions of suffering can be very important to his well-being. This might include finding new ways to nurture relationships with family or friends. He could improve his mental well-being with medication to address depression or strategies to battle negative thinking. Also, working towards peace with his situation might be a priority.
Caregivers
Caregivers of those living with chronic illness suffer too. The stress of caregiving can lead to poor mental well-being. Examples include anxiety, overwhelm, grief or anger. Physical health can suffer when caregiving persists. For instance, many caregivers experience high blood pressure, fatigue, or frequent sickness. They may have little time and energy to nurture relationships. And they may mourn the life they have also lost. Financial health can feel stressed with lost time at work and extra costs.
The physical and nonphysical distress of care-giving is real. So, building the skills for well-being are as important for the caregiver as the patient. For each person, learning these skills can help them to live as well as possible, even in difficult circumstances.
Building the skills of well-being is my mission at The Chronic Wellness Coach. You CAN learn strategies to improve physical and nonphysical health. No matter where you are on the illness journey, these strategies can help you to live as well as possible with chronic disease.
Stayed tuned for my weekly blog. Each week I talk about strategies and ideas to help you figure out the next steps to living with chronic illness. I hope you’ll be part of the conversation.
Disclaimer: This blog is a resource through which you may obtain information regarding your health and wellness. Information is intended for the general reader and is not a substitute for medical advice. The content in this blog is intended to be informational only and not interpreted as specific advice for you. There may be delays, omissions, or inaccuracies in information contained in this blog. You should always consult with a licensed healthcare professional who is familiar with your health and past medical history before making any changes you may read about in this blog.